Our trip to RAREsummit19

Published by Findacure

Published In 2019
Beacon – The rare disease charity for patient groups

Register for the in-person Cambridge Rare Disease Showcase!

Our first in-person event since 2020 is coming!

Join us and the rare community at Clayton Hotel in Cambridge for a night full of

conversation and celebration!

 

New workshop announced

Register to attend our first in-person workshop since 2020 – Demonstrating impact: the key to a successful rare disease patient group. Learn how to implement impact measurement, management, monitoring and reporting

Register for our new webinar series!

‘Developing your rare disease patient group team from the bottom up’ will consist of three webinars over the next three months looking at recruiting volunteers, finding members of staff and succession planning. Sign up for webinar 1 now!

Register for EURORDIS’ 2022 European Conference on Rare Diseases and Orphan Products (ECRD)

Taking place online from 27 June to 1 July, the ECRD is recognised globally as the largest, patient-led rare disease policy event. Claim your tickets now!

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Findacure has become Beacon!

Beacon is hosting The International Rare Disease Showcase – live now!

Bear with us while we make this website mobile-friendly

We understand there will be mobile navigation issues to resolve on our new site. Please bear with us as we work on them.

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Ensuring that no one faces their rare journey alone

Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone. Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.

Rare diseases affect between 3.5% (263 million) and 5.9% (446 million) of the global population. Sadly, this population struggles to receive a diagnosis, treatment or meet another with the same condition. Patient groups are a lifeline for those living with a rare disease. They provide emotional support and advice for day-to-day living. Patient groups are the impetus behind new care pathways and treatments.

We are here to help those groups be the best that they can be.

Ensuring that no one faces their rare journey alone

Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone. Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.

Rare diseases affect between 3.5% (263 million) and 5.9% (446 million) of the global population. Sadly, this population struggles to receive a diagnosis, treatment or meet another with the same condition. Patient groups are a lifeline for those living with a rare disease. They provide emotional support and advice for day-to-day living. Patient groups are the impetus behind new care pathways and treatments.

We are here to help those groups be the best that they can be.

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What we do

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Patient group training

Our in-person, virtual and on-demand trainings give patient organisations the tools and confidence they need to form, grow and professionalise.

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Rare Community

Our community projects unite patient groups, researchers, healthcare professionals and industry representatives to encourage collaborations, advancing the field of rare diseases.

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Rare disease research

Our drug repurposing conference and research projects aim to bring crucial new treatments to the world’s rarest patients.

Patient group training

Our in-person, virtual and on-demand trainings give patient organisations the tools and confidence they need to form, grow and professionalise.

Cambridge Rare Disease Network - Our trip to RAREsummit19 6

Rare Community

Our community projects unite patient groups, researchers, healthcare professionals and industry representatives to encourage collaborations, advancing the field of rare diseases.

Cambridge Rare Disease Network - Our trip to RAREsummit19 7

Rare disease research

Our drug repurposing conference and research projects aim to bring crucial new treatments to the world’s rarest patients.

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Cambridge Rare Disease Network - Our trip to RAREsummit19 5

Meet our patient groups

Meet Wendy, Chair of the Norrie Disease Foundation

Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.

Meet Allison, co-founder of Ring 20 Research and Support UK

As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.

Meet Russell, Trustee of the LHON Society

Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.

Meet Amanda, Trustee and Chair of The EOS Network

Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.

Meet Bhavna, CEO of Stargardt’s Connected

Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.

Upcoming events

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What’s happening at Beacon?

Read our latest blog

Meet our patient groups

Meet Allison, co-founder of Ring 20 Research and Support UK

As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.

Meet Bhavna, CEO of Stargardt’s Connected

Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.

Meet Russell, Trustee of the LHON Society

Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.

Meet Wendy, Chair of the Norrie Disease Foundation

Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.

Meet Amanda, Trustee and Chair of The EOS Network

Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.

Upcoming events

Calendar of Events

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What’s happening at Beacon?

Read our latest blog

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How Beacon can help you

Click on the link which best describes you. We’ll point you to our most relevant pages and additional places for support within the rare disease community.

How Beacon can help you

Click on the link which best describes you. We’ll point you to our most relevant pages and additional places for support within the rare disease community.

Support our mission

 

At Beacon, we want to ensure that no one walks their rare journey alone. To achieve this, rare diseases must be viewed under one, united umbrella by patient groups, researchers and policymakers alike. Our work encourages patient organisations to work together for the benefit of all rare conditions. The pharmaceutical industry and research sectors must recognise the importance of the patient voice.

Work with us to make this happen! Discover our corporate giving and community fundraising opportunities to learn how you can bring hope to millions of people around the world. Each pound you give will help to break the isolation experienced by rare patients around the world.

Wolfram Syndrome UK testimonial

“Beacon have been there helping me to connect with other Rare Disease Charity communities…”

Pitt Hopkins UK testimonial

“There has been advice about how to become a charity, how to fundraise, how to work with researchers. They think of everything!”

Ataxia and Me testimonial

“It has been fantastic to be in this rare disease family knowing you are not alone in this rare disease community.”

MdDS Information and Help testimonial

“Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome in the UK”

FOP Friends testimonial

Beacon’s programmes, trainings, webinars, support, student voice prize, connections, and of course RareChat sessions, have all been fantastic.

Alexion, AstraZeneca Rare Disease testimonial

“We believe that Beacon, as an umbrella organization, helps bring the rare disease community together…”

Metabolic Support UK testimonial

“As we elevate our individual support, empowerment, advocacy, and insight offers, we hope to partner with Beacon on future campaigns…”

Behçet’s UK testimonial

“Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years.”

Castleman Disease Collaborative Network testimonial

“Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to treatments for devastating illnesses.”

Support our mission

 

At Beacon, we want to ensure that no one walks their rare journey alone. To achieve this, rare diseases must be viewed under one, united umbrella by patient groups, researchers and policymakers alike.

Our work encourages patient organisations to work together for the benefit of all rare conditions. The pharmaceutical industry and research sectors must recognise the importance of the patient voice.

Work with us to make this happen! Discover our corporate giving and community fundraising opportunities to learn how you can bring hope to millions of people around the world. Each pound you give will help to break the isolation experienced by rare patients around the world.

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